ACDF 16 Wks Post-op & Still Miserable - Advice/Hope Wanted - Spinal Cord Disorders Message Board

******** · 06-02-2008, 11:58 AM

I'll keep this as short as I can...
I had a 2 level (c-5/6 & c-6/7) ACDF on February 8, 2008. Here it is 16 weeks later about all I can say is things are different - not better. Prior to surgery left arm & deltoid pain were my main complaints. Immediately after the surgery my left shoulder began to hurt in the form of a constant ache and occasional sharp pain and my left triceps was (ever since surgery) about 50% weaker than my right. Nonetheless, for the first 10 weeks after the surgery I was feeling progressively better - a lot of which was, I think, recovery from the surgery itself. At about 7 weeks post-op I returned to work (computer stuff) without significant issues. Then at about 10 weeks post-op things sort of reached a plateau and began (in my opinion) moving rather backwards. Since mid-April, I've developed a painful (burning) and stiff neck which never goes away. Sharp pains and occasional small spasms in both deltoids. Sharp pains going down both arms and into the hands/fingers and continued weakness without improvement in my left triceps. In addition to that, ever since surgery my lower back, which has some disk issues as well, has felt kind of like it is on fire (a kind of tired, burning sensation) with occasional jolts of pain in my buttocks, legs and feet.
SOOOoooo... I am definitely wondering about a few things!

Has anyone had an overall similar experience and what was the outcome?
Is this painful and stiff neck a fairly common part of the healing process?
For that matter, does this all sound like a healing process or more bad news?
When does the Doc (Neurosurgeon in my case) usually get an MRI or something to see how things look inside there post-op? - Mine has yet to look at his work...

At my last visit to the NS on May 12, I told him what I've now told you. He prescribed 3 weeks of physical therapy, 3x per week. The PT feels good - until they stop - then it all comes back. In a week I go back to the NS and I'm feeling rather frustrated. My quality of life ain't what I'd like it to be with this constant pain, etc. But, am I expecting too much too soon?

PNo · 06-03-2008, 02:23 AM

Hey there - hang in! I am fused C4-7 after 2 surgeries. What you are feeling is probably average for the course. You also are probably doing too much even though you think lots of time has passed - it hasn't. Until you have a good solid fusion you can expect to have pain and symtpoms for sure. Full fusion can take up to a year in some people, but by around 6 months most fuse. Over time you may improve - you are aligned differently now in your spine and your body is adjusting. Along with your nerves and bones healing. This process can take a long time (even 1 to 2 years). C5 is one the most used levels and you will find you may have remenant issues. Even over time your pain will improve, but you may not be completely pain free. Usually the surgeons do xrays about 6 weeks, 3 months and 6 months, but every doc is different. Reduce your more active hobbies for a month and see if you get a little better.

erin72 · 06-03-2008, 10:30 AM

Hi, so sorry to hear about your issues. I, too, experienced what your talking about. I had ACDF 3/07, one level(c5/6) and as I progresed through healing, I seemed to get worse! After about a year, I was walking with a cane and unable to carry much because of the muscle weakness in my extremeties. My NS didn't know what to do for me. I ended up, out od frustration, going to another surgeon, on my own bill, seeking another opinion. He suggested a CT scan and found I wasn't fusing at all. Ask your doc to perform a CT scan. Better yet, demand one, they have to meet a patients request, don't let him/her talk you out od it, it's your health!! Once I got my diagnosis, I never went back to the old NS, and I fought the insurance company to go out of network. I had a revision surgery a month ago 5/5/08, and I feel amazingly well!!!! Trust me, I've been down the path, fight for your health, mine only deteriated for over a year. That plays crazy tricks with your mental health!! My docs tried to make me feel like I was crazy or making it up, they didn't think anything was wrong, so I started to believe them, they're doctors!!! Don't buy into it, they make mistakes, too!!
Good luck, let us know how things go, and mind ***********, she's a saint!! She's always right, too. You might be overdoing it, too!
~Blessings

******** · 06-03-2008, 11:27 AM

Erin72 & ***********, Both of your posts are helpful! Since everyone's unique, I realize there is no "normal", but I've read and heard so many stories from people who either got almost "immediate" relief or who were feeling well and/or making progress by 10 or 12 weeks.
*********** suggested that I may be overdoing it and that may be the case. However my occupation is "Geek" (System and database stuff in a laid-back, academic setting) so it isn't like I'm a hod carrier or pogo stick tester...

Both my work and my hobbies are relatively sedentary so I'm not sure where I can cut back... I do walk about 3 miles a day, but walking usually doesn't bother me unless my lower back is having fits. If I just need to give it more time, then I suppose I'll just have to be a big boy and endure. But, man, this constant aching and shooting pains are slowly turning me into Geekzilla - just ask my kids! A couple of other things I failed to mention in my first post are very frequent headaches that seem to be "rooted' in my neck and occasional sharp, deep pains from inside my neck around where I'd imagine the work was done. Probably just more healing. I believe I will push for a follow-up CT scan at my next appointment -- if for no other reason than to give me some peace-of-mind... Thanks!

Ronn9 · 06-03-2008, 04:44 PM

Hey back pain... i feel your pain... I had a acdf c5-c7 just like you.... then about a year aho i had the same area done thru the bacl (posterior) I am still having limited relief ......... the acdf didnt fuse thats why they went in thru the back now that it has fused i still have alot of arm and neck pain now getting headaches as well.... dont give up there has to be relief somehow!!! my advice to you is try EVERYTHING possible befor you let them open you up again..... im not sure it was the right thing to do with myself....... Good Luck and Keep us posted!!!